Summary

By Remicade Dream April 8th, 2011, under Uncategorized

Pills

In 2010, I had:

29 doctor’s office visits

19 sets of labs drawn

17 physical therapy appointments

8 trips to the hospital for Remicade infusions

3 trips to the hospital/urgent care for other reasons

96 prescriptions filled (not including Remicade)

 

And the sad thing is, these numbers are smaller than I thought they would be.

Privacy and Pain

By Remicade Dream March 12th, 2011, under Uncategorized

privacy

 

In this article about Mark Zuckerberg, creator of Facebook, author Lev Grossman describes the early days of the internet as follows:

The presiding myth of the Internet through the 1980s and 1990s was that when you went online, you could shed your earthly baggage and be whoever you wanted. Your age, your gender, your race, your job, your marriage, where you lived, where you went to school – all that fell away.

By contrast, the viewpoint espoused by Zuckerberg, and the concept on which Facebook is built, is “the fact that people yearned not to be liberated from their daily lives but to be more deeply embedded in them.” Today, it’s all about connecting, networking, sharing everything with everybody. You don’t get to be different people in different places – you have one online persona that you present to everyone.

Well, fine, but I don’t really think life works that way. Not all of us want to share everything with everyone, but at the same time, it’s not fun to be left out. So we do a sort of delicate dance between the right to a private life and the desire to be connected to people. Since becoming sick, I have discovered in myself an intense need for privacy that I never realized I had.

This blog is anonymous – my real name is in no way connected to it. This has given me the freedom to talk about my disease and its details in a way that might be of help to others who are going through the same thing, and it’s given me an outlet. But over time, this privacy has eroded somewhat. There are one or two people in my “real life” who have also seen this blog, and I need to be conscious of them when I write. There’s also another problem – I have become “Facebook friends” with several of the people on one of the RA boards I frequent. I have not shared my health issues with any of the people in my professional life, and so I never mention them on my Facebook page. The people from the RA board know this, and so far they have been completely respectful of this boundary. But it does leave me feeling strangely vulnerable – people from my “sick life,” who I have never met, have access to my “real life.”

I’m finding myself at an awkward spot with this right now. I’ve been going through some incredibly painful things in my personal life right now, things that are not about my illness. I have not even shared them with most of the people in my “real life” – just a select few. This blog could be a place to talk about them, if not for those few readers who actually know who I am. The RA boards could also be a place to talk about them, but I’d be concerned that someone might make an accidental remark on Facebook.

I don’t know how to explain why I can talk openly on this blog about the details of my illness but them clam up when it comes to other aspects of my life. When I was first diagnosed with RA, I was completely silent about it for about a year, only telling my immediate family and a few close friends. Maybe I needed the time and privacy for processing. It’s possible that the same thing is happening here. I’ve been reading blogs from others in the chronic illness world who are sharing their struggles more openly than I am right now. Reading them helps me, and I am grateful for them – maybe they are braver than I am? But I’ve also read blog entries by others who are wrestling with the same privacy issues as myself.

Right now, I feel a strong need for an anonymous place to talk about everything, but I am struggling, always keeping in mind that I don’t necessarily have complete anonymity here. The result has been complete radio silence on this blog for a long time.

Darn you, Mark Zuckerberg.

Something Meaningful

By Remicade Dream January 27th, 2011, under Uncategorized

I have been waiting and waiting and waiting to post because I felt as if I needed to have something meaningful to say. Well, I don’t. So I guess I’ll just do a brief catching-up-type post and then hope that inspiration strikes at some point!

My dissertation defense was a success, so you can now call me Doc! It still feels really strange to be done after all that work and time. I’m a bit at loose ends, trying to figure out what to do next. I’ve had a long period of rest – more than a month – and am starting to feel as if I’d like another project.

As for the RA, things have actually been pretty good. My doctor did raise my Remicade to 8 vials, and it really seems to have helped. On the whole, I’m doing very well. I also got off prednisone completely, which was a bumpy experience, and I hope I can stay off it for awhile.

Not much else to add. I’ll try to write something more profound next time!

Just checking in…

By Remicade Dream November 7th, 2010, under Uncategorized

Just wanted to let you all know that I’m still here!  I’m getting ready to defend my doctoral dissertation, so I haven’t had much time for anything else lately.  As for the RA, things are still not too great, but I’m not in the major flare anymore.  I’m having another Remicade infusion on Thursday – we are increasing my dose to 8 (!) vials.  If this doesn’t do the trick, it’s going to be time to change medications.  More about that when I have time!

In other news, my server is going to be migrating soon, so this blog will be offline for a short time.  But it will be back, so don’t go away!

Some of you have expressed concern about my long silence – thank you for that.  I know that I worry too when my favorite blogs are quiet for too long.  Wish I could tell you it’s because I’m out running and jumping and playing… oh well!  But things aren’t so bad, either.

I’ll write more soon, I hope!

Nope.

By Remicade Dream September 19th, 2010, under Uncategorized

I’m sorry it’s been more than a month since I wrote.  It’s been a tough time and I’ve been very sad. 

For those of you who were left hanging by my last post, the doctor declared it not remission, but a “near-remission experience.”  My bloodwork did look great, and my symptoms were on the whole SO much better, but joint examination showed that there were still just a few joints that were in a state of active inflammation.  That’s still great, amazing progress for me, and we were both in a very hopeful place.

Then the flare hit.  It began with an IC (interstitial cystitis) flare that wouldn’t get under control and soon triggered a full-on RA flare.  Fevers every afternoon, swollen fingers and knees, brain fog, exhaustion, the whole nine yards.  It’s far from being the worst flare I’ve ever had – the IC was actually much more difficult and painful to deal with this time around than the RA – but it’s not a good development.  Whether I got rundown from the IC or from stress (there’s been a lot of it lately, which I won’t go into) isn’t clear, and maybe isn’t even important.  The point is that I’m back in a bad place now.  I’m also back on prednisone, which I worked so hard to eliminate.  This really broke my heart, especially since it’s not a good step in the battle against adrenal insufficiency, which I was winning beautifully.  On the bright side, the adrenal problem was really caused by long-term daily pred usage.  Since this is intended to be a short-term pred taper, and since my adrenals have recovered almost completely, it’s not likely that it will trigger the same problem again so quickly. 

My Remicade infusion is on Thursday, and I hope it will quiet this down.  I also had labwork done on Friday, so we’ll see if it shows anything new, and talk about medication changes if it does.  In the meantime, I guess all I can really do is hang on.  I’ve been here before, and I can do it.  I’m just disappointed.

Is This Remission?

By Remicade Dream August 16th, 2010, under Uncategorized

Question mark

I’m pretty sure the answer is “no,” at least in the way I understand remission.  But these days, I am questioning my understanding of remission.  This is definitely a case in which I’d like to get input from you, my readers who also have chronic illnesses.

I don’t think that I am experiencing a “true” remission.  I am still very much dependent on many different medications to keep me working.  We actually increased my Remicade a month and a half ago (seven vials – yowee!), so I’m definitely not anywhere close to drug-free remission.  That may not be a realistic goal for me, although it sure would be lovely.

But am I in drug-induced remission?  This is what I’m trying to figure out.  If I am, it’s not like I thought it would be.  My idea of remission was one of two things: either I would go back to feeling the way I did before I got RA, or I would feel great, like I do when I’m on high doses of prednisone.  Since I’ve had very little permanent joint damage, those ideas didn’t seem that unrealistic.  But that’s not what I’m experiencing.

Here’s how I am: my bloodwork looks great.  My joints look great.  I haven’t needed a cane in ages, and I’m beginning to feel that I might not need my disabled parking permit anymore either.  I haven’t had a flare that truly knocked me down in awhile now.  I have tapered completely off prednisone and didn’t go into a flare when it was done.  Little by little, I am regaining my ability to do things I couldn’t do before.  I think I really am getting better, but so slowly it’s been hard to notice.  And I didn’t think it would be like that.  I thought that once we reached the right medication combination or dosage, I would see an instant, dramatic improvement.

I don’t really know what’s going on.  I still have fatigue, and I still wake up stiff and take awhile to get moving.  Also, I had a stressful day yesterday, and had what sure seemed like a stress-induced flare today.  Very interesting, since I have never had one – it’s usually doing too much or getting too little sleep that make me flare (or, sometimes, just randomness).  It was a mini-flare, nothing like the flares I’ve had before, but I felt awful this morning, took a long time to get moving, and my left knee is very sore.  Doesn’t being in remission mean that you don’t get flares?

I am seeing my rheumatologist tomorrow, and am interested to see what he has to say about this.  I still think a lot of my fatigue and achiness come not from the RA being active, but rather from the after-effects of the RA having been active for so long.  I am still about twenty pounds overweight, and my muscles have tightened and atrophied over time from disuse.   I am still recovering from adrenal insufficiency.  I also have a few other conditions that have been acting up, like asthma and interstitial cystitis.  Am I feeling mildly crummy because of them, and not because of RA?  Sometimes I forget that there are other reasons besides RA for feeling bad.  

I don’t want to go swimming in that river in Egypt, and I feel that I’m in some danger of doing just that.  But I also don’t want to live life like I’m sicker than I really am right now. 

Your thoughts?  What does “remission” look like?

Lucky Seven?

By Remicade Dream July 17th, 2010, under Uncategorized

642736_lucky_seven

Sorry I’ve been absent from my blog for so long.  I’ve been taking a kind of “vacation” from all things RA, while I am also literally on vacation.  The RA vacation was unintentional.  I’m spending the month at my parents’ house, across the country from where I live, and ever since I got here, I just haven’t felt like dealing with RA.  I’m still taking my meds and everything, but I’ve stopped keeping my health journal, and I’ve been pushing myself a little too hard, trying to feel “normal.”  It’s starting to catch up with me a bit… so here I am, reminding myself that I need to give the RA a little attention.  (Damn… this really interferes with the nice denial streak I had going!)

My rheumatologist recently made the decision to increase my Remicade to seven vials.  I know there have been people on higher dosages, but still, this seems pretty high to me.  It also makes me one of his highest-dosage patients.  I have my fingers crossed that seven will be my lucky number.  I think I’ve been really determined to prove that this is the case, so I’ve been ignoring the slow, creeping return of my symptoms since the infusion.  (The first week, I think, really WAS good.)

 Because of back-to-back UTIs, I wasn’t able to get my infusion when I was supposed to, right before my trip.  So I ended up having to make arrangements to see a new rheumatologist here in the state where my parents live.  My hometown rheumatologist was great about sending him my records and labs, and I also came to the visit prepared with copies and information for him.  I’ve written before about my infusion experiences, and this was a chance to see yet another environment.  But I’ll write about that another time… long story short, it was a basically good experience.

This was the first time I’ve had seven vials, and I was absolutely determined that this time it would work.  I had also just had a landmark birthday the day before the infusion, which doubled my determination.  I feel that in general things have been on an upswing, and the new rheumatologist seemed to think so too.  It’s nice to have fresh eyes looking at your case sometimes, and he said that from my most recent labs and my joint examination, I actually look like things are beginning to be controlled.  There are just two stubborn blood numbers that are going up and not down, but that doesn’t necessarily mean that I am getting worse – sometimes blood numbers just do funny things.  I’ve also been questioning things lately, wondering how much of my fatigue and achiness is really the RA as opposed to my recent problems with adrenal insufficiency, or even muscle weakness due to not exercising.  (The adrenal insufficiency, by the way, seems to be reversing itself beautifully, and I am finally off prednisone!  Yay for something good!)

So all of this determination and pondering and questioning have led to a kind of thinking that goes something like this:  My blood numbers look basically very good.  My joints look great.  My AM cortisol and ACTH levels are now in the low normal range instead of the basement.  Going off prednisone, shockingly, did NOT result in a major flare (Hallelujah!).  Therefore… Maybe my RA is not really active right now.  Maybe I need to start testing this a little and find out what’s really up.  Maybe I need to build up some strength after being unable to do things for so long.

I really don’t know whether this is denial or not.  All I can tell you is that I’m not doing so well right now.  And it’s giving me a chance to look at something else: my deep need for an EXPLANATION.  I can’t just accept that I’m feeling tired and achy and cranky – I need a label to put to it.  I can’t make sense out of feeling this way while my inflammation markers are low.  I’ve always had aggressive sero-positive RA.  I am realizing that it must be damn frustrating to be sero-negative, when you feel like crap and know something is wrong and nothing is showing up on labwork.

Interesting… this blog entry has taken a completely different turn than I expected.  I was just going to come on and write a brief note about hoping that seven will be my lucky Remicade number.  Who knew all of this was going on?

I guess that’s why we do this blogging thing…

Problem with Comments

By Remicade Dream June 21st, 2010, under Uncategorized

I’ve been feeling lonely lately – not a single comment!  Then it dawned on me that the comments stopped right when I added a new anti-spam feature to my blog.  So I logged out, tried to comment as a different user – and it didn’t work!  Voila!

Anyway, I’ve disabled the anti-spam feature until I can figure out what the problem was.  Feel free to comment if you want to!

My Inner Geek

By Remicade Dream June 17th, 2010, under Uncategorized

Star-Trek-Voyager-p35

Okay, I’m about to reveal my true geeky nature to my blog readership… any fellow geeks out there?

Lately RA has given me (or forced on me) quite a bit of couch time, and I’ve been using some of it to catch up with reruns of Star Trek: Voyager.  Although I was a faithful follower of Star Trek: TNG, I never got interested in Voyager when it was actually on.  I started watching the reruns somewhere in the middle of the series, and they’ve come and gone on different TV stations over time, so there are still early episodes I’ve never seen.

For those of you not familiar with Voyager, the basic premise is this: The Federation Starship Voyager, while on a mission to track down a renegade enemy ship, is swept by a powerful alien force into a distant part of the galaxy called the Delta Quadrant.  The alien responsible for this promptly dies, leaving the crew stranded.  Traveling at top speed, it will take them 75 years to get back home.  The enemy ship is there too, and the two crews decide to join forces and make the journey together.  (There’s more to it than this, but this is the basic idea.)

Recently, I was watching one of the first-season episodes – the sixth episode, actually, which is titled “The Cloud.”  At the beginning of the episode, the captain, in a log entry, says, “Our journey home is several weeks old now, and I have begun to notice in my crew, and in myself, a subtle change, as the reality of our situation settles in.”  She discusses this with her first officer, and he mentions that the crew is going through a natural grieving period.

I don’t know why, but this really struck me.  A grieving period.  Suddenly, I realized how much Voyager is like life with RA.

In Voyager, the crew’s whole life is suddenly changed by a force outside their control.  They are light-years from the lives they knew, and may never get back there.  They have to learn to coexist comfortably with enemies.  They have limited resources, and need to learn to use them carefully (spoons, anyone?).  The future is a giant question mark.  Their relationships change, too.  In a later season of the show, when the crew finally finds a way to communicate with people back on Earth, they find that some people have given them up for dead and moved on with their lives, while others are still waiting faithfully.  They also form new relationships with each other and with new people they meet during their travels, some of which are stronger than the ones they’ve left behind. 

But what interests me most is the captain’s approach to the mission.  Her primary goal is to get her crew back to the Alpha Quadrant, and she never gives up hope that this will happen.  At the same time, though, she takes advantage of the opportunity to explore this new part of the galaxy, even though doing so sometimes takes them further away from their goal.  She also encourages the crew to make their lives happy and enriching along the way.  They don’t spend every moment focusing on the need to get back home.

Sometimes, especially in the early shows, the crew believes that they have found a way home, and are crushed when it doesn’t pan out.  (This always reminds me a little of Gilligan’s Island.)  As the show evolves, less time is spent on this kind of plotline, and more on the life they have built for themselves in the Delta Quadrant.  And yet, this isn’t accomplished by giving up on the goal.

I’ve often wondered if this is possible with RA.  It seems like the perfect way to be, really.  On the one hand, I never want to give up on the goal of remission.  On the other hand, I don’t want to be so obsessed with it that I miss the opportunity to make my life as rich as possible, right here, right now.  If the Voyager crew had spent all seven of their years in the Delta Quadrant focusing on nothing but getting home, it would have been a boring show.  It also would have been boring if they had given up hope and settled on a nice planet somewhere.

I guess I just wish I knew for sure whether or not I’m going to get “home” someday.  But that’s not the way it works in real life.

Musical Interlude

By Remicade Dream May 16th, 2010, under Uncategorized

CB0629294

It’s been awhile since I wrote a new song.  The last few months have been especially rough – flares, low energy from the adrenal problems I’ve been having, exhaustion and discouragement and malaise.  So I figure, why not make something creative out of it? 

I had some trouble coming up with a title for this one.  It was originally called “Flare Song,” because that’s what it’s about.  Right now the working title is “Hit The Ground,” but I’m not sure about this one either.  Suggestions? 

***Update – I have changed the name to “Easy.”  Thanks, Lene!  This was one of the titles tossing around in my head, but when someone else said it, it just clicked in.

This also marks the debut of Little Martin!

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